Who Knew?

When Angie was a toddler, and very, very fragile, I tried to imagine what she would be like when she was older.  While we stayed in the hospital, I saw school-aged children and would wonder, "Will she be like them?".  Some of those children were extremely needy and others were higher-functioning, but none of them were quite like the Angie of today.  Look at her:

NEVER in all of my imaginings, did I picture this beautiful, independent, vibrant girl.  She surprises and amazes me every day.  I can't count the times daily that she says, "Mom, I can do that" or "Let me help with that".  Who knew?

During the long hours in the hospital, I wondered about a lot of things and sometimes I tried to guess about the trajectory of Angie's condition.  Would she lose her sight?  Would the seizures come back?  Will kids accept her "different" appearance?  Will her heart eventually weaken after pumping extra blood through her little body?  Will she live?

The questions have not been answered and won't be answered until later in the journey.  What I have learned is this.......I don't have to worry about it today.  What is true today is that Angie's peers DO accept her as one of them.  She has the best possible doctors caring for her and it is their job to address her long-term health. Angie herself doesn't waste a minute of her precious day worrying about the future.  She has too much to do!

Our "normal" today is mostly good days with a few tough ones thrown in to keep us humble.  Angie can go for weeks without a medical appointment and during those times we almost forget the need for them.  Then, a phone call reminds us.  I got that phone call this week from one of Angie's therapists.  She is concerned and we are too.  Angie is having a lot of falls and is not catching herself.  She has had some headaches.  The muscles in her right arm and shoulder are becoming tight from lack of use.  Her vision seems to be off.

We will start the rounds of appointments right away to investigate our concerns.  I am optimistic that serious concerns will be ruled out and I trust the doctors completely to provide Angie with the best care.  They love her too.  This is a bump in the road compared to the potholes we have overcome in the past.  There is nothing to panic about-we knew these days would come. Instead, I will stop trying to guess about the future and will focus on being present in the moment we are in.  I don't want to miss anything!

The Ultimate Gift

I want to share some news, in an attempt to keep my word about remaining real and honest here.  It is tough stuff, though.  We have ventured one step closer to completing Angie's adoption.  She has now been declared "legally free" for adoption.  It sounds simple and pleasant, but let me shed some light on the complexity for you.......

In order for Angie to become "legally free", both parents have to have their parental rights terminated in some manner.  Sadly, Angie's biological father is recently deceased.  His loss is a shock and a tragedy for his loved ones.  Angie did not know her biological father so she will not recognize the loss, other than its reality as a part of her history someday.  We are heartbroken by the shortened life of this man and wish his story were different. My heart goes out to his family.

Angie's birth mother is the individual who gave Angie the freedom to be adopted this week and she is the one I want you to know more about. Unlike most of the biological parents whose children have been in our home, Angie's birth mother has never questioned our parenting or tried to paint us in a negative light to make herself look like the better parent.  Unlike the other parents we have encountered, she has never hurt or neglected her child either before or after her birth.  Her birth mother has loved Angie with all of heart and she and her family have supported us for the past 7+ years.  This woman has done nothing "wrong". She simply is not capable of caring for Angie and she has never disputed this fact.

This week, Angie's mom attended a meeting with her lawyer and Angie's caseworker. She signed the paperwork stating that she was relinquishing her parental rights so that Angie can be adopted. I cannot imagine.  It does not matter that Angie has never lived with her or that she always knew she would not be Angie's custodial parent.  She is a mom.  This woman is a mom like I am a mom and she loves her child.  She loves her enough to give her a permanent family.  And, today, she is still a mom.

Think about the enormity of this situation.  There is so much pain in the midst of our joy.  So much hurt in the presence of this miracle.  It is hard for me, knowing this. I will not take our good fortune for granted or forget what has been sacrificed on Angie's behalf. I will remain forever grateful.

Miraculous

Toby and I attended the long-awaited meeting with the DHS Current Caretaker Committee this morning.  The unbiased, impersonal and judgmental group that we expected was anything but.   They were extremely caring and they had a strong bias......for Angie's quality of life.  The entire experience was nothing I had pictured when I played scenarios out in my head 1000 times in recent days.

Toby surprised me by being the one who described Angie and the fact that we often "forget" her special needs because there are so many other special things about Angie.  He spoke of our devotion to Angie and the huge number of people she has touched with her engaging spirit.  He told them about her sense of humor and her drive to keep up with peers. I was so proud.  To be perfectly honest, he did most of the talking because I was busy crying.  Impressive, I know, but has been a long ride and it just caught up with me.

I was overwhelmed by the compassion of the committee.  The facilitator was working in our local DHS office when Angie's battle began  and she knew the length and depth of our journey.  She was thankful to be involved in a story that she called MIRACULOUS at least 5 times.  She said she knew no other word to describe it and of course we agreed.  She boldly expressed her surprise that Angie is living today.  I have not come out and said it in so many words, but her situation was just that dire.

There were hard questions.  Who will care for Angie's needs if something were to happen to you?  How will you support your other children if Angie's condition deteriorates or, God forbid, shortens her life?  Are you aware of the risks?  We could only answer honestly (I had recovered my composure by then) that our children have been with us through uncertain, terrifying periods with Angie already.  We have shared information about her condition and have addressed their questions and their fears along the way.  Most heartwarming has been to watch the kids support each other when Angie has been in the hospital.   No amount of risk can deter us from making this child fully our own.  And we have a plan for all of our children in the event of our early death and she will be included.

We left the meeting feeling encouraged by having heard once again how Angie has touched lives that we did not even know about.  I never get tired of hearing it. It is one of my favorite things about her miracle-the far-reaching impact it has had.  We don't know the final outcome or the decision the committee will make.  As we left the office, though, we could not imagine that the outcome will be anything but adoption for Angie.

Independence

Independence.  We take it for granted every single day.  What does it really mean?  When we get out of bed each morning and start our day we are able to shower, dress, make breakfast, and get ready for our day. We do not require another's help.  We drive to work, do our jobs, come home, make dinner and go to bed.  Then, we start it all over the next day.  These are just the basics.  Most of us do other things too.  We might go to the gym, walk the dog, or go shopping.  Angie doesn't have that.

Angie requires assistance for all of the basics of life.  Dressing, bathing, eating, everything.  She cannot get in or out of the car or put her shoes on.  She is dependent on her caregivers and she knows we will be there to help.  This seems like a downer post, I know, but wait.........

Angie can do so much more than we ever thought she would.  She tells jokes, plays with friends, walks, talks, and learns.  Most importantly, she loves with all of her heart.  We never knew if she would do any of this.  This week, I was reminded of how much Angie CAN do.

Angie rides the bus to school with other children who have special needs.  An assistant comes onto the bus to help her out of her seat, off the bus, and into the school to her classroom.  It has always been her routine.  Until now.

The staff at school decided to try something new last week.  The assistant went onto the bus to get Angie out of her seat and down the stairs off of the bus.  But then she stopped and waited.  Angie joined the other kids walking into the school, blending into the crowd and visiting with friends on the way to the classroom.  The assistant stayed behind.

When I heard, I cried a little bit.  Sometimes I tend to assume Angie needs me to do for her instead of challenging her to be independent.  The wonderful people who work with Angie do not, and I am so thankful.  My heart's desire is for her to have as many typical childhood experiences as possible.  The teachers and assistants at Angie's school promote her independence time after time and she shows her abilities with every opportunity.  She is the bravest, strongest person I know.

If you have been instrumental one of Angie's special moments, thank you.  Thank you for believing in her and for cheering her on.  You are an integral part of her miracle and Toby and I recognize you.  We honor you.  And we can't wait to see what happens next.